“That’s Normal, We All Do That!”

You know what really grinds my gears? Since I was diagnosed with Multiple Sclerosis I have been dealing with this and I know almost everyone with MS has had this experience. It probably does not even get to many people that much but for me? It really starts to boil my blood with frustration. I am talking about when you try to explain what you are feeling to someone who does not have MS and they tell you “oh, that is normal”. I am not sure why it gets to me so much, maybe I am really just frustrated with myself for being unable to adequately describe something to someone or maybe I am just frustrated that some people just do not seem to get that it’s pretty obvious that what I am experiencing is not normal. Or are they just trying to play it down to make us feel better? Well, thanks… but by telling me it is normal I feel like I am being told I am just complaining. Like what I am experiencing is nothing. I am not sure but either way I hate it and I know I am not alone. So for this article in particular I want to go over some examples relating to memory and cognition issues.

What Was I Doing?

In this scenario, I suddenly find myself walking down the hall into a room in my house. I don’t even remember getting up to go anywhere! I am just in the hall now, walking. It almost feels like waking up from a dream; “Wait… where am I going?” or maybe I snap out of it to find myself holding a hammer wondering, “what was I going to do with this?” This happens to me way more than you would think. So I try to explain this to someone and the first thing they say is “Oh, that’s normal, I do that all the time,” or my personal favorite (since I am in my early 20’s) “That’s normal, it’s just part of getting older”. Maybe the age thing works for some people but for most of us it just is not that. Here is the difference: frequency. The average individual is bound to have experienced this from time to time but those of us with MS may experience this all the time! I know for me it’s just part of life, that is just how it is now. Point is, if the average individual experiences this once a week (for example) and we experience this multiple times a day then statistically speaking it is pretty obvious that there is just a little more going on here…

What’s-His-Face…

Next up: memory loss. Well, technically most of us probably have not actually “lost” a memory but instead we can no longer make the connections in our brain to find a memory so it just sits in there like a needle in a haystack. Either way, I hate when someone asks me something like “What is that actor’s name?” and I look at the picture and instantly recognize him, in fact, it is one of my favorite actors of all time! I even have a huge collection of his movies but for some reason the name escapes me. Finally I just pull out my phone and do a quick search on Google; Anthony Hopkins! How could I forget? Well we all do that from time to time but once again the difference is frequency. It’s one thing if you feel mentally stumped even once a day but when you frequently have days that this happens at least once in every conversation (even if it’s just with yourself in your head) then it’s probably safe to assume it’s not normal.

What the Heck Was I Thinking?

OK now let’s move away from memory-related symptoms to cognitive related problems. Ever finish eating breakfast and realize you just put the milk in the pantry and the box of cereal in the fridge? That is a pretty simple mistake though, so how about finding yourself putting toothpaste on your shaving razor instead of your toothbrush? Or reaching for a candle like you are going to take a sip of water? When someone tells me “That’s normal” all I can think is “Just because it has happened to you once does not mean it is normal for me to do this as often as I do”.

It’s like your ability to think logically is temporarily disabled. Sometimes I’ll be looking for something like the TV remote only to find it in the refrigerator! “Jeez, was I drunk or something last night?” Well, no, I was not but I still did that. Ever see the movie Step Brothers with Will Ferrell? In this comedy he is a 40 year old man still living with his parents and his step-brother, another 40 year old man who like Will Ferrell’s character is still a kid in the head. Well there is a scene where the parents wake up to find the house a mess and the mother’s purse is in the fridge and the couch pillows are in the oven. The two step brothers were sleepwalking all night and were responsible for the mess and misplaced items. OK So why am I telling you about this? Well in this movie the actors playing these two step brothers are trying to do really over the top things for the sake of humor. So when someone tells me that we all do weird things like set the remote in the fridge I think of this movie because they were doing things that I myself actually do from time to time only they are trying to be funny because they know that we all know those things are not normal, at least not for an adult. So why am I being told this is normal? How do they not get it?

There are so many more examples regarding so many other MS symptoms but those are my personal favorites. But what about you? What do people tell you is normal that you know without a shadow of a doubt is not normal? Share below! Surely this will be a fun conversation!

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Comments

Bless you so much for being able to express how that phrase that makes my blood boil. I find that family members usually resort to this phrase. I know they think they are helping but Lord have mercy I have just about popped a blood vessel when someone says it. I could never figure out why though. Thanks again!

This is maddening! I have even forgotten what I was talking about to someone right in the middle of our conversation! Words won’t come to me or the wrong word comes out without me realizing it until I see the strange look on the person’s face.

I have been diagnosed with MS for 16 years now. I am approaching my 58th birthday in a couple of weeks so there have been many times that I wonder if this is something that I should chalk up to getting older but I don’t feel that almost 58 is all that old! I have friends that are still working and sharp (mentally) so what is MS and what is aging?

I often have numbness in my right leg. Someone was asking me about my MS and my symptoms, someone listening in on my conversation made the dumb&$$ comment “if her leg was numb she wouldn’t be walking on it”.
I was actually in a state of disbelief at what I had just heard. Don’t think I’ll ever forget that one.

YES. All of this. Except for me, it’s not about the cognitive issues, it’s my fatigue.

A few weeks ago, I went a little too hard on the weekend. I stayed out late two nights in a row. I drank a little too much. It took me almost a week to recover. When discussing this with my boyfriend (whom I live with), I expressed my frustration about my body and how long it take me to recover after a weekend of trying to live my life like a “normal” 25 year old. I was near frustrated tears about how tired I was; about how hard it was to get out of bed in the morning; about how I wished that my body would work for me, not against me.

His response? “Babe. I get it. I’m not entirely back to normal yet either.”

Basically a slap in the face. While I know he was trying to not let me allow my MS to keep me from living my life, what I heard was, “Oh, please. Stop complaining. You’re fine.”

It’s frustrating. I live with the man. We’ve been together since before my diagnosis. He’s been there through all the changes, and yet, he still doesn’t REALLY understand what I’m going through, how I’m feeling. He doesn’t truly get that when I tell him I’m “tired” it’s more than just my body saying “time for bed.” It’s bigger than that. And it is really frustrating that sometimes he brushes it off.

Fatigue is probably the most misunderstood symptom we have when it comes to trying to explain it to people who do not have MS. “yeah, I get pretty tired too”. It’s not at all the same as “being tired” because most the time even if I lie down I can’t sleep, I just feel ,miserable.

Thank you Matt, you have expressed what we as MS’ers experience . My husband is really very good most of the time by accepting what I am experiencing even though he doesn’t actually get it, he really can’t “get it”. The few times he says “That’s normal, or I get that, or I do that.” makes me feel like I’ve been slapped in the face. Mostly now, I just move on and try to understand where he is coming from. Probably the biggest thing I deal with now, is when I just can’t follow what he is talking about, I can’t follow simple thought processes like I used to. I can’t remember 1 thing much less a list of things. I worked with 3 ladies at the voting polls this week, I could NOT remember a name even after being with them all day and even after I would spell her name in order to picture it so I could recall it. It seems like names are extremely hard for some reason. When I apologize in advance to someone for probably not remembering their name as soon as I say it, they say “Oh I do that too.” They don’t realize what I am talking about until they are unfortunate enough to spend time with me. I also have real problems remembering grammar rules, how to spell words, punctuation etc., even though I used to be very good at it. I can’t remember recipes I have been making for over 40 yrs.. If I am following a written recipe, I have to look at the recipe after each ingredient, or step until I am done. I can’t go to the pantry and get 2 or 3 of the required ingredients, I have to take the written recipe with me, unless I want to make a trip back & forth until I gather all of the ingredients….It is SO frustrating. The Dr. syas it is not Alzheimers, but is from my MS. Most of my lesions are in the 2 frontal lobes of my brain, the “higher thinking” parts of the brain. Physically no one would even no that I have MS, but this thinking/remembering thing as hard too. Ok, done with my pity party, thanks for the forum to unload to people I know will “get it”! : )

Several years ago I went to a new neurologist on a day that I was having a particularly hard time speaking. I just couldn’t get my thoughts together and then get the words wouldn’t come out. What did she say to me? “Oh that’s OK, we all do that.” I wanted to scream, “No, it’s not OK. And unless you have MS too, you have no idea what I am trying to tell you.” Needless to say, I was soon looking for another new doctor. Another time I went to my GP and by the time they got to me I couldn’t remember why I was there. He had refused at an earlier appointment to write a letter to the court to tell them why I couldn’t sit on a jury. When, at this appointment I had to go out and get my husband to tell them why I was there, I got that letter. It isn’t frustrating enough, we have to also put up with the ignorance of others who won’t take the time to listen and learn. So no, Matt, you aren’t alone in this. I’m sorry you are so young and have to deal with it. Great topic!!

After years of trying to find a good doctor, I finally found a genius but even he, as much as he understands MS, will from time to time pull one of the “that’s normal, don’t worry about it” things on me.

Great topic, looks like everyone has mentioned the same cognitive problem I have had ant the same comments I get from people. I don’t get upset with them, they just don’t understand and are usually trying to relate with me. Once in a while you will get a jerk, but they are a jerk to everyone so you can’t take it personally. Potter

Matt, I guess we’ve all experienced the “I do that too” comment and the irritation it brings, but I’m struggling now with my husband’s always having whatever jewel MS is now inflicting. Why is that so irritating?

The memory thing is wicked. It bugs me so much when people say they forget stuff all the time too. Perfect example: I was watching TV and heard an argument outside. 2 men had stopped their cars right in front of my house and were about to have a fight. I thought I was going to have to call the police. But as soon as it started, it ended. No fight, just maybe 10 seconds worth of yelling. The next day my next door neighbor asked me if I heard it. I did not remember it at all and was feeling mad for having missed it. I told her to call me if anything like that happens so I can be “entertained”, lol. She said she would have if it would have lasted, but it ended so quick. After she left, I was laying down on the couch all bummed out that I had missed something exciting. Then after a few hours, the scene I had witnessed did a replay in my mind and I realized I DID see it. When I told my next door neighbor about my crazy misfired memory ~ or non-memory ~ she still did not “get it” and said she’s done that too. Huh??? I just can’t make people understand. I think I’ll use the “frequency” thing next time trying to explain my awful memory issues. But people will probably still say “oh me too” or “that’s just part of getting older”. Extremely frustrating! Stepping off my soapbox now, lol ~ Caren

Great article! My experience was when I went to the VA hospital for an evaluation after being diagnosed. I tried to explain to the dr. that my memory was crap. I could not remember things. My wife was with me and she vouched for me. The dr. kept coming up with excuses like telling me I probably had a lot of things I was trying to remember at the same time, so it just seemed like I couldn’t remember. Or it’s because I’m getting old. I was only 50… The funny thing about the entire appointment was that when I left, I’d forgotten my glasses in his office and he had to chase me down 4 stories and out the front door. He never changed his mind though… I probably just had too many things to remember at that moment to remember my glasses. What an idiot dr.!

My all time favorite? I was going to brush my teeth & found myself putting MOUSSE on my toothbrush! The best thing about that, NO ONE, ,at least no one that I know, was willing to admit to doing that. But if anyone had claimed it was normal, I probably would have choked them..

Matt,
thanks for the great article and insight. As a 59 year old male with a fiancé, our ages play a role in remembering “STUFF” however your article describes to a T what I’ve been telling her all along. Yes age does play a role but MS makes it worse and compounds everything. Even when you tell people you have MS, they just look at you dumbfounded and expect you to be normal. Also, people’s own opinion about this disease comes into play as each individual’s opinion varies with or without facts. Sorry about the ramble, but I just had “A MOMENT” of what the hell am I talking about. Appreciate the insight you have shared.

Yeap!! I get that so I’ve gotten to where I don’t talk to anyone about my MS symptoms anymore. I have a friend that’s a nurse that was always trying to fix me with a what I call one size fits all aproach. She meant well but irritated me so much.
I now have to be really firm and almost rude to her so she’ll get it.

I’ve also gotten to the point where I no longer talk about my symptoms because people don’t understand. It makes me feel better to find others that “get it”. People just think it’s all about not being able to walk well. But it’s electric shocks, pushing so hard trying just to empty your bladder that you physically hurt yourself, loss of balance/coordination which is the biggest cause of falling all the time, double vision all the time, blurry vision when I push myself to do things too hard…blah blah blah. It’s easy to go on and on. Thanks for listening to me rant, lol. And, hang in there, I “get” you!

I’ve had something happen to me twice now. Get in my truck to head home from work.
It’s hot out. Need to roll down the window. My left hand goes into action, but instead of hitting the button for the window, it flips the left turn signal on! Ugh!

OH my gosh- so glad someone else does things like that. I have to be very careful when driving and I’m tired. I’ve found myself trying to turn on the washers and clicking the high beams, or more scary- trying to put the car in drive and going to reverse, or parking and hitting the high beams instead of putting it in park. Thankfully, I’ve only done that a couple of times.

What I’m dealing with right how is the way my family treats me since I got sick. Both my brother and my son told me to “get a job” when I was having financial problems and asked them to borrow money. I got a big lecture from my son about how hard he works, and how I needed to “grow up” and go out a get a job with Uber or McDonald’s. They think I’m still the same way I was 20 years ago, when I could do anything and get any job. Of course, since they never visit, I guess they can’t be expected to understand that things are different now and I can barely walk. Social Security Disability believed I was disabled, but not them. The other day it was really hot and my leg quit working. My other son became angry and told me that I just need to get used to the heat, build up a tolerance for it. When I tried to explain it’s because of nerve damage, he got angry. I guess I can’t expect anyone who doesn’t have this disease to understand. I didn’t, before I got bad, but I’m getting really tired of trying to tell people it’s not a choice, me being this way. It was forced on me by this disease, and if I could choose something else, I sure wound have. All I can say is people, mostly people in my family, sure are stupid.

So, So sorry perreaju@hotmail.com It is so painful to feel that rejection. I hope you will find support from the many MS sites like this one. It is really helpful to be able to correspond with others who know exactly what you are talking about.

I hate it when I say I’m tired and need to sit for a bit followed by a “me too” or “I’m tired too) by one of my guys at work. I guess I need to say I’m MS tired. I’m pretty open about the MS and how it affects me to my crew and bosses, but one of them just doesn’t get it. He trys to use it as an excuse to sit around and do nothing because I’m sitting down. (and to be fair- my job does require me to spend time in the office- his does not.) But I’m being a “mean/pushy boss” when I give him things to do if he stays… But the whole “I’m tired too” followed with that look (you guys know which one I’m referring to)- well, I’d love to give him a real kick in the rear with my steel toes!

sounds like they are in denial- big time. It’s other people who get seriously sick with an incurable illness, not THEIR family members. It’s too hard to process- too scary to think about or admit, so they do everything to make it go away in their minds. So sorry you have to deal with that- I’m not a hugs kinda a person, but when I read what you wrote- I just wanted to give you one. I hope they wake up some day, for your sake.

Thanks for this excellent article. I do not have MS, but I live with Sally who does have MS. She forwarded the article to me and I read it with great interest.
Oh, where to start? First my confession, I am guilty of so many of the things mentioned by the author and commenters. As a guy and athlete my whole life, but older now — almost 70 — I am very quick to respond to stimuli. A few examples:
— I anticipate the speed of a car going by on the street that I want to enter, like leading a teammate with a pass going for a fast break in basketball, and pull quickly into traffic.
— I respond very quickly to someone saying, “Look at that pink elephant in the back yard”.
— In the kitchen I move quickly, when preparing my weekend speciality of bacon with onion, tomato, cheese omelets.
— Concerning the refrigerator, I insist on, “Tall things on tall shelves, short things on short shelves.”

OK, enough of my examples. I only mention these in order to acknowledge my impatience with Sally several times a day. I am sincerely trying to do better, but I seem to be a slow learner.

So to pick up on my examples, here are some things Sally does which she will readily recognize when she reads this:
— Sally waits until the car passing by on the street has gone well past and then seems to process the need to enter traffic, not anticipating speed or movement. So, I get anxious and impatient riding with her. She slows down coming to a green light seeming to expect the light to turn red. To which I have commented a few times — not so nicely or politely — “If you slow down just a little more, that green light will turn red and we will be able to sit here for a couple of minutes.”
— When we are in the office together, with the TV on but also, each looking at our own computer, I might say, “Look at how goofy Trump’s hair looks.” About 5 seconds later she will say, “What…what… did you say Trump?” And I reply — not so patiently — “Well, he is gone now.”
— When I just about have the bacon and omelets ready, I ask her to come and set the table, etc., etc… She sets a couple of dishes out and maybe the glasses. But then with my need for speed, I quickly pour the milk, put the bread in the toaster, napkins, salt and pepper, butter, jelly. You get the idea.
— When we are finished eating, she will often put a small item in the fridge, maybe a baggie with leftovers on the tall shelf intended for large items. My thought is, “If we have little items on the tall shelves, where are the gallons of milk, soda and large bottles of orange going to go? They won’t fit on shelves 6 inches high.”

So this is my confession. I am aware of the daily challenges, Sally faces. I read the information she gives me. I try to be understanding and be patient. BUT, sometimes I am just an impatient jerk and fall well short of my goals for living with a person with MS. I will try to do better. I do love you, Sally!

Having MS requires a lot of patience but sometimes I think that living with someone who has MS when you do not requires even more, obviously I do not know so I can only imagine. All I know for sure is both “parties” have to be patient with each other and try to communicate as best as possible

Thank you Matt. Your insightful article moved my partner, Hallingdahl to reply in a way that surprised me! You perfectly put my thoughts into words. I have struggled to articulate my experiences as well as you did. I look forward to more of your reflections.

Thank you so much for sharing Matt. The weirdest thing was the other day I was thinking, am I losing my mind. Your post has made me breathe a sigh of relief that thank goodness I am not losing my mind because I experience very similar situations. I at least once a week try to either put my laptop in the fridge or toilet. A lot of the time when I am speaking to someone I cant remember a word or I lose my train of thought; it is like I travel to another planet; and once I have “travelled” back I cant remember where I left off or what I have or haven’t said or if I said it in my mind or out loud. It also drives me mad when people say it is normal and it happens with age, I am only 38 years old, seriously. This has been extremely difficult to deal with because I used to have a good memory. It is hard when people say you look so good, and yes maybe I look good on the outside, however if they knew what was going on inside, they would have a completely different perspective. So I have learnt to just say thank you to them, because I know they do not understand, and that is ok because I have also learnt that they do not need to, although at times it does really get to me.

Oh Thank You for saying it so well! It has become my pet peeve! What is extremely frustrating is trying to explain why I can’t be trusted to do “simple” data entry! Even tho I have an MRI that taught me what a “Black Hole” is, I still get the comments.
I am blessed with a husband that laughs with me when I ask him to load the dishes in the car wash. Or I read something in my journal & have ab- so- lute-lee no recall of the event. I used to be the go to person in my family for memories.
The best I can describe it – info goes in, travels across the information highway, shorts out & Lord only knows where it ends up on the other side! It’s a bonus when I find a person to talk with that doesn’t try to finish my thoughts for me

I have found that so many, many people just don’t get it, going way back to 1981, when the symptoms were starting to interfere with my job.
I remember one day having this shooting pain in the side of my head, I describe it as an ice pick being stuck deeply in my head quickly and quickly removed, all within 4 or 5 seconds. It hurt so much, it caused me to wince, shutting one eye. A co-worker walked over to me and said, what’s wrong, got a headache? I said no, really odd sharp pain in my head that I’ve been getting off and on for awhile now. She laughed, shook her head, as if I was off my rocker and said, c’mon, it’s just a headache, stop complaining!

Fast forward, I was diagnosed with MS about a month later. Periods of weakness, fatigue, were joked about by that same co-worker…”not enough sleep?” “burning the candle at both ends?” and so on and so on.

People who never experience illness or disability look at the world through rose colored glasses. Everything is fine in “their” world, you’re the nut because you have something wrong with you!

I find myself doing many of the thing you mentioned.
I’ll pour myself a cup of tea and start to return the hot tea kettle to ….the refrigerator? Nope, it doesn’t go there….turn right, go back to the stove.
Or, I’ll pour some milk, start to return it to the …microwave??? Nope, doesn’t go there!
It used to be something I did very rarely, now…it’s much more often. I really have to concentrate on EVERYTHING I am doing or I will most likely make a mistake.

I have turned the water on in the bath tub to run a bath, walk away, sit down at my computer or on the couch, completely forget that there’s water running…and just about to go over the top!

I “used to” have a great memory. Now, I have a terrible time remembering names, something I was so perfect at doing.
Conversations are tough, I can’t always put the words together. I hesitate, try to think, sometimes it comes back, sometimes not….and I look stupid…which I’m not.

No, it’s not normal but only we, the people who are burdened with this ugly disease, can understand.

You are right, unless they have gone through (obviously they would have to have MS or something similar) EXACTLY what you are they can not understand and since this disease affects everyone differently the odds that they have are pretty slim.

I endure mental lapses all the time, it’s very frustrating… But to the outside world? I appear fine. I lose track of the conversation, can’t come up with simple answers … I sometimes have a delay when I answer… A long pause before I speak and this is always taken the wrong way. My husband often says “hello? Are you listening?” “Why are you sitting there with a blank face?” He doesn’t get it and honestly I get tired of trying to explain my weirdness.

Well, “hello stupid husband…do you REALIZE that I have a neurological disease and it affects every part of me??!!!!!!!”

I’m not a patient person and I do get annoyed with people easily. I will gladly get in someone’s face if they are being insulting…”hello, are you listening…and why are you sitting there with a blank face??”
Right about then I would have said, “Yeh STUPID, I AM listening but sometimes it’s difficult for me to answer quickly thanks to this great disease I have, MULTIPLE SCLEROSIS!!!!!!!!!”